Sexual Health

Partner Perspectives on Cystic Fibrosis Sexual and Reproductive Health Care.

TL;DR

Partner perspectives reveal limited progression in CF-related SRH care, with patient-initiated discussions, paternalistic provider views, and lack of provider collaboration reinforcing outdated notions that parenthood in CF is not an option.

Key Findings

Partners of females with CF reported limited knowledge about CF-related sexual and reproductive health, often relying on self-directed learning rather than provider-delivered information.

  • Interviews were conducted with 20 partners of females with CF
  • Thematic analysis was used to analyze transcribed verbatim interviews
  • Partners reported that SRH information was not proactively provided by healthcare teams
  • Self-directed research and information-seeking was a common pattern among partners

SRH discussions in CF care were primarily patient-initiated rather than provider-initiated.

  • Partners described a pattern where females with CF had to raise SRH topics themselves rather than having clinicians introduce them
  • This patient-initiated dynamic was identified as a barrier to comprehensive SRH care
  • The finding suggests a systemic gap in proactive SRH counseling within CF clinical settings

Partners perceived paternalistic provider attitudes that reinforced outdated notions that parenthood is not an option for females with CF.

  • Paternalistic provider views were identified as a recurring theme across partner interviews
  • Partners reported that some clinicians discouraged or dismissed reproductive aspirations
  • These attitudes were perceived as reflecting outdated care norms inconsistent with advances in CF treatment
  • A perceived lack of provider collaboration further compounded this issue

Partners provided tangible, daily support to reduce disease burden for females with CF and expressed a desire to be included in the SRH decision-making process.

  • Partners described hands-on, day-to-day caregiving roles that intersected with SRH concerns
  • Partners expressed a desire to be part of the decision-making unit in SRH discussions
  • Their exclusion from SRH conversations was perceived as a gap in patient-centered care
  • This finding highlights the informal caregiving role partners play beyond formal medical visits

CF clinicians were perceived to lack adequate SRH-specific training, contributing to deficiencies in care.

  • Partners reported experiences suggesting clinicians were not well-equipped to address SRH topics in the context of CF
  • The study identifies SRH-specific training for CF clinicians as imperative to improve patient-centered care
  • A perceived lack of provider collaboration was noted as reinforcing inadequate SRH care delivery

The study used a mixed-methods design with qualitative interviews as the primary data source for partner SRH perspectives.

  • Sample consisted of 20 partners of females with CF
  • Interviews were transcribed verbatim
  • Thematic analysis was employed to identify SRH-related knowledge, experiences, preferences, and concerns
  • This represents the first known exploration of partner perspectives on SRH care in CF

What This Means

This research suggests that partners of women with cystic fibrosis (CF) are largely left out of conversations about sexual and reproductive health (SRH) care, despite playing an active daily role in supporting their partners' health. In a study of 20 partners, researchers found that information about CF and reproductive health was rarely offered proactively by healthcare providers — instead, women with CF typically had to bring up these topics themselves. Some partners also described encountering healthcare providers who held outdated or dismissive attitudes about whether parenthood was a realistic or appropriate goal for women with CF. The study also found that partners wanted to be included in reproductive health decision-making and felt that their exclusion made it harder to provide meaningful support. They described providing hands-on daily care that directly affected their partner's disease burden, yet they were rarely brought into clinical conversations. Many partners had to seek out information on their own because it was not offered by the care team. This research suggests that CF care could be improved by training clinicians to proactively discuss sexual and reproductive health, updating care practices to reflect modern treatment advances that have made parenthood a realistic option for many people with CF, and deliberately including partners in these discussions. The findings highlight a gap between the advances that have been made in CF treatment broadly and the slower progress in addressing the reproductive health needs and concerns of women with CF and their partners.

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Citation

Woods B, Bray L, Brown J, Campbell C, Corcoran J, Ladores-Barrett S. (2026). Partner Perspectives on Cystic Fibrosis Sexual and Reproductive Health Care.. Health education & behavior : the official publication of the Society for Public Health Education. https://doi.org/10.1177/10901981251346812